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Wednesday, 22 August 2012

Update on Proposed New WCA Descriptors (EBR)

I am shamelessly copying this over from Kaliya Franklin's blog as I to am really ill and dosed up to the eyeballs. It's about all I can do to copy and paste, and this is proving a struggle. Mind sent us these new descriptors yesterday, and time is short, so if you can comment below, please do and I too will pass any feedback on........

Update on Proposed New WCA Descriptors (EBR)

We've been passed the latest version of the Evidence Based Review WCA descriptors for people to comment on and scrutinise. This version has to be finalised by the end of the week so there isn't much time. If you leave comments below I can direct the right people to read them but due to health issues I won't be able to do more than that. There's also a slightly different scoring system proposed, but for consultation purposes all you really need to know is that the N/A, Occasional, Frequent, Most boxes roughly correlate to points as follows, 0, 6, 9, 15

Health prevents me from going through this in the detail it requires but my initial impression is that it has lost much of the simplicity of the earlier draft and it appears to me that this is much closer to what a joint test for ESA and PIP would look like... However, testing an alternative version of a WCA can only be a good thing if the DWP are sensible enough to compare both proposals and cherry pick the best parts..

But please bear in mind - intense pain and lots of oramorph do not make for good cognitive functioning!

Movement - within a work environment or travelling to work

1.Mobilising

Mobilising unaided by another person with or without a walking stick, manual wheelchair or other aid normally used, for long periods indoors and outdoors without stopping, and climbing a flight of 12 steps without discomfort, exhaustion or risk of falling. This must be done reliably, repeatedly, safely and in a timely manner, which takes into account speed, time taken and manner of mobilising.

a

Has no difficulty mobilising indoors and outdoors

N/A

Occ

Freq

Most

b

Cannot climb or descend a flight of 12 steps

c

Has some difficulty[1] mobilizing, indoors and outdoors, for long periods[2]

d

Has significant difficulty[3] mobilising, indoors and outdoors, for long periods

e

Has some difficulty mobilising, indoors and outdoors, for short periods[4]

f

Has significant difficulty mobilizing, indoors and outdoors, for short periods

2.Getting About

Getting to familiar and unfamiliar places reliably, repeatedly, safely and in a timely manner, unaided by another person.

a

Has no difficulty getting to familiar and unfamiliar places.

N/A

Occ

Freq

Most

b

Because of distress or disorientation has some difficulty getting to unfamiliar places

c

Because of distress or disorientation has significant difficulty getting to unfamiliar places

d

Because of distress or disorientation has some difficulty getting to familiar places

e

Because of distress or disorientation has significant difficulty getting to familiar places

3.Navigating

Navigating around familiar and unfamiliar places unaided by another person reliably, repeatedly, safely and in a timely manner, using a guide dog or other aid if normally used.

a

Able to navigate around familiar and unfamiliar places

N/A

Occ

Freq

Most

b

Has some difficulty navigating around unfamiliar surroundings, without being accompanied by another person, due to sensory impairment

c

Has significant difficulty navigating around unfamiliar surroundings, without being accompanied by another person, due to sensory impairment

d

Has some difficulty navigating around familiar surroundings, without being accompanied by another person, due to sensory impairment

e

Has significant difficulty navigating around familiar surroundings, without being accompanied by another person, due to sensory impairment

Movement – at a work station

4.Standing and sitting

Reliably, repeatedly, safely and in a timely manner, using any aid that it is reasonable to expect them to use, and without receiving physical assistance from another person:

·Staying in one position (such as a workstation) for at least an hour, either by standing, sitting or a combination of the two, and

·Moving between this position and another.

a

Able to stay in one position for at least an hour, either by standing, sitting or a combination of the two, and able to move between this position and another

Claimant cannot:

N/A

Occ

Freq

Most

b

Stay in one position (either by standing, sitting, or a combination of the two) unassisted by another person in one place for more than one hour without significant discomfort, loss of balance or exhaustion

c

Stay in one position unassisted by another person in one place for more than 30 minutes (either by standing, sitting, or a combination of the two) without significant discomfort, loss of balance or exhaustion

d

Move from a seated position to a mobilising position without physical assistance from another person

5.Reaching, picking up and moving

Reaching up, down or sideways a reasonable distance, and picking up and move a range of differently-sized objects up to 1kg

Understanding communication reliably, repeatedly, safely and in a timely manner, by both verbal means (such as hearing or lip reading), non-verbal means (such as intonation or body language) andwritten means (such as reading 16 point print or Braille), using any aid it is reasonable to expect them to use

a

Has no difficulty understanding communication

Due to sensory, cognitive or social difficulties:

N/A

Occ

Freq

Most

b

Has some difficulty understanding complex information from a stranger

c

Has significant difficulty understanding complex information from a stranger

d

Has some difficulty understanding simple information from a stranger

e

Has significant difficulty understanding simple information from a stranger

14. Making self understood

Making self understood reliably, repeatedly, safely and in a timely manner through speaking, writing, typing, or other means normally used, unaided by another person

48 comments:

had a quick read & didn't see any mention of medication affecting ability to do tasks, Take quite a few pain tablets & another medication because my sleep is disturbed. Note on the pack it says whilst on the medication I shouldn't drive or operate machinery.

If asked I could manage some of the tasks but would have problem if I had to do it repeatedly.

I also find if I overdo things one day the effects can last for days at a time.

I think they should consider if the person has tried to return to work and note the effects, my last attempt with permission involved 3 hours a day 2 days a week and they stopped me doing it after 2 weeks because the effects were obvious.

My main problem is constant chronic pain and despite all the treatments I've received the diagnosis was they couldn't do anymore to help improve it, they also said if I don't manage it carefully it would get worse quicker. There should be some consideration if a medical condition cannot be treated or improved, surely evidence from the consultant should play a part.

One assumes that the current rubric, that difficulties can arise from a condition or the effects of medication (or a combination), will still be applied.

Repetition is mentioned in most of the proposed descriptors.

However, we need clarity on how soon repetition applies - many people, as you say, get effects lasting days. As well as considering following days, we need to consider how frequently something would have to be repeated if you were doing it as part of a job - most would need to be done many, many times a day.

I certainly think the effects of prescription medication should be taken into account.

Medication plays a part on my ability to carry out tasks. Over and above any physical considerations, if I were to take my medication as prescribed there would be Health and Safety implications due to drowsiness affecting concentration and cognitive functions.

Me too I am on some 20 different medications for heart, diabetes, depression, anxiety, and pain and they basically knock me out and sometimes I get very sick either after taking them or sometimes also when I have forgotten to take them.

Periods of reduced or impaired concentration are back to requiring "lost or altered consciousness", which has historically been interpreted pretty narrowly. There is, however, "maintaining focus", which is an improvement.

I would like to see 16, "managing schedule" (okay, now titled "organising self and planning") one elaborated on - would a persistent problem with one aspect of a schedule (eg getting up in the morning) be considered, and if so as what descriptor? From a 'real world' point of view, this would obviously make sense, to give points for problems with excessive sleep inertia. Employers take a dim view of people who can't reliably get up in the morning.

The zero point descriptor for 17, "coping with change", only requires no difficulty with planned changes, yet some scoring descriptors refer to unplanned changes, leading to possible confusion over what to apply. It should refer to unplanned changes in the zero point descriptor.

For 12, continence, I'm not sure what an "unusual need to use the toilet" would be.

Yes, I agree there should be elaboration on 16. Sleep and lack of inertia for example can be very debilitating aspects of a person's condition. Especially when you can't get out of bed in the morning And/or suffer from fatigue which varies in severity and occurrence.

I notices on Kayla's Blog there was some additional information about the descriptors:

KeyN/A – Not applicableOcc – OccasionallyFreq – FrequentlyMost – Most or all of the time

[1] Some difficulty - could include has to do so at a slow pace and to stop during the process of walking the distance on one occasion. May have problems with balance but not at risk of falling.

[2] Long periods - can walk for a period of 10 minutes or distance of 500m, (journey to/from work: having to get out of a house to a bus stop or equivalent)

[3] Significant difficulty - could include the pace would be significantly slow, movement is restricted or painful, the person has to stop on more that one occasion, there is a significant risk / history of falling, or is unable to mobilise independently.

[4] Short period - can walk for a period of a minute (whatever consensus is for times) or distance of 50m (something that represents moving around in a work place).

[5] Tasks to be defined/ examples given

[6] Note: As an initial indicator of the level of tasks, provisional definitions of tasks could include toe following (will need further work and consultation with Mencap):

I agree, the mobilising descriptors need to be quantified. Acceptable aids need to be specified, for example "not electric wheelchair".

I would suggest "difficulty" is not split into "some" or "significant". To my mind "difficulty" means this function cannot be performed at work. Then the function should be clearly described, for example:

Mobilising continuously for 30mins, for 10mins, for 1min. I'm not sure if a distance needs to be given, but if so, minimum distances covered in that time: "at least 50m" and so on, could be added in brackets.

It is then possible for the assessor to enquire what the difficulty is, for example balance, breathing, joint pain...

A flight of 12 stairs is considerable, there needs to be a lesser goal of 3 steps as well.

I'm not sure what it used to be (I haven't been migrated yet) but the lost or altered consciousness bit - was it always how long it takes to recover? I faint up to 8 times a day every day, but I recover pretty quickly so I wouldn't score much on that. And yet I'd be a health and safety nightmare in a work environment!

I've had a read and can't find anything that would cover pain conditions (e.g. Complex Regional Pain Syndrome (CRPS) / Reflex Sympathetic Dystrophy (RSD)). I think it was in Prof. Harrington's second report that he acknowledged that pain is not accounted for in ESA and yet has a huge impact on whether you can work or not. The descriptors would really benefit from a "Pain" descriptor, this could be incorporated into a Pain and Fatigue descriptor which would cover things like pain conditions (e.g. CRPS/RSD), CFS/ME, Fibromyalgia as well as other conditions causing debilitating pain. It is not enough to do scoring based on medications taken either because often medication is ineffective and so may not be prescribed but the pain is then severe and uncontrolled.

It's there under points 4,5 and 6: Standing and Sitting, Reaching, Picking Up and Moving, Manual Dexterity/Hand Movement... under "significant discomfort". But yes, "or pain" should be added to make it clearer.

The wording and arrangement of these first five points is atrociously unclear. Why not set up the qualifiers, the "reliably, repeatedly, safely, in a timely manner, using appropriate aids, without assistance from another person" and then the task, eg:· Staying in one position (such as a workstation) either by standing, sitting or a combination of the two, and· Moving between this position and another.

- and then put in the categories to tick, either "not at all", "for 30mins", "for at least an hour"?

One small point jumps out at me in relation to the descriptors on 'navigating'. All descripors contain the phrase "due to sensory impairment". Sensory impairment is not the only reason that a person may have difficulty navigating.Personally, I have always had quite marked dyspraxia as well as dyslexia. Prior to developing a disability, this was a very small issue. However, it does mean that I profoundly struggle to comprehend where places are in relation to other places, and this makes disruption to known routes, or finding new routes very problematic for me. I have been totally stranded, and needed police assistance before, when road works blocked where I needed to cross a road, because my dyspraxia interacted with my ability to find an alternative wheelchair friendly crossing point that still had me facing in the right direction. It was the fact that the roadworks blocked the only wheelchair access out of the tube station on that occasion that was the biggest issue, but another wheelchair user wouldn't have been as paniced by not being able to plan a new route because they couldn't comprehend a mental map of where they were in relation to where they needed to be. This kind of navigation difficulty is actually quite common, and in an otherwise non-disabled person it can be very minor in effect, they get lost more and walk the longer way around, but nothing more. Add other disabilities to the mix and it can lead, as it has with me, to total panic and requiring emergency services assistance. Yet, by those descriptors, someone could be virtually housebond due to this kind of difficulty and still score zero if the reason for their difficulty is neuro-diversity not sensory impairment

I agree. I have problems navigating due to results,now permanent, of head injury, which means I don't remember the way to places even quite local or I have been several times before. I can easily get lost, not know which way to go, so I have to have someone with me if I go out a) to drive for me and b) to accompany me anywhere on foot, plus loads of other reasons in the mix, such as loss of balance walking or turning head to cross road."Sensory" impairment seems to me to really mean just the ability to see.

The idea is to avoid double counting.Blind people get points under the navigating descriptor, those with 'mental' problems under getting about.You need to be blind, with problems with distress or disorientation, in order to count under both.

these are much better than before - so many thanks to you all for all your hard work ( to put it mildly !) Sue

My key question is are they leaving out 'it varies' Happy to see CraftyWeeBee has clarified that this has been refined to the 4 point key which makes good sense.

I continue to wonder why there is no reference to impaired respiratory function

I agree with Farnam (having spent a few years with brain damage) that there is nothing in there to cover spatial impairment - or indeed a range of neurological disabilities/'wiring' damage.

I agree re no ref to pain levels - although it's subjective, medics use a 1 - 10 scale for self-assessment

Of course no single form can cover every condition - so I doI hope there will be a clearly marked sentence to stress that respondents can also add their own notes to clarify the basic points on the form.

They are very much better- I just pray that there is something in there about fatigue and pain. It needs to be there all over the place - People with MS etc get fatigued by doing very little and it changes from ne moment to the nect not even one day to the next!

It is so much better - I just hope that it truly makes a difference and I thank you and Kaliya for making this happen.

Interesting potential changes. Although there is nothing on there I can see about paranoia about strutting sexist, racist, homophobic men. Do you think the "Health Care professional" will understand if I explain that to them? When I explain about my previous workplaces?

the navigating also needs to include for anxiety related reasons not being able to navigate round a place. I can sometimes get somewhere, but then when I get there (for example a supermarket known to me) cannot get round it and go into a complete jelly state and have to leave without having got my groceries.

I agree that the movement discriptors are better than before. The arm ones are also very good, they basically describe what I had put in my ESA50 (which was ignored) the inclusion of repeatedly & safely should also help.I have to also agree about the fatigue, this too is part of my condition, although it can be brought on by 'overdoing' it in some way, most times there is no reason for it and can leave you like that for days and it effects memory etc.A lot of my own problems are physical but I can understand if there needs be more improvement in the other descriptors.

Seems like a big improvement to me at quick reading.But WHY do they always shy away from putting PAIN into the descriptors. It MUST explicitly be there. It affects everything in life from what you can physically do, concentration, mood, ability to sleep and therefore function the next day, as do the meds needed. Only someone who hasn't lived every minute of every day in pain for years could think this could be left out.

Many thanks to Sue and Kaliya for working so hard on this.We all owe you an enormous debt. I so hope you will both find some recovery time from somewhere or ask for help with things other people could do.

I wonder why the sudden rush to get this sorted? Could it be Grayling is kacking himself at the Parliamentary debate on the WCA due on 4th September? He jut wants something to say like "we've produced new descriptors, so please don't make me lose my job for the suffering I've knowingly inflicted on thousands of sick people" We will NEVER forget or forgive and there will be a day of reckoning.

Sorry, not feeling so good myself at the moment but I just wanted you to know I have read it and to say I think there should be something in there about pain, fatigue and the after effects of doing certain things/work/jobs/tasks etc, unless I am missing something (as I said I am not too good at the moment and brain fog is one of my symptoms...)Thanks Sue & Kaliya for both publishing this. x

Yes these descriptors are for the assessor to fill in, he/she makes that judgement where to leave a cross. So not the whole info from our assessment form that we fill in, should or need appear here.

If in the interview we say we would be too tired to repeat something again, either the same day or the next, then that should cover the after-effects of performing a particular task. If we can't recover, we can't do the task repeatedly.

This is why a recording is useful, should the assessor somehow not register that, in effect, we cannot do a certain task.

mobilising manual wheelchair or other aid normally used worries me as fear that could be altered to mean powerchair as well to deny ESA to more people.movement at a work station, wheelchair/powerchair users are penalised on this one, discomfort can't be alleviated by moving around as permanently seated. modern powerchairs have gismos to overcome this but are not nhs supplied and would not possibly be 'workstation' friendly but feel this point will be disregarded.nothing about requiring physical assistance to transfer from one seated position to another such as a wheelie onto the toilet.no mention of the ability to eat or drink unaided which previously was a very good immediate 'filter' for the profoundly disabled. wheelie, bending, reaching, stretching and lifting has the potential to be dangerous, health and safety issue being overlooked as is ability to safely evacuate the workplace

on these new descriptors feel the physically disabled lose out but that is only my personal opinion

Just a couple of points from my perspective as a chronic basilar/vestibular/classic migraineur. I'm in the middle of a migraine so if any of this is confused/muddled please ask me to clarify.

Part 5 Reaching, picking up and movingReaching up, down or sideways a reasonable distance, and picking up and move a range of differently-sized objects up to 1kg:

Does not take into account a limitation on head and eye movements related to vestibular disorders which are part of vestibular/basilar migraine. This means that moving the eyes or turning the head, even if the body remains still,can result in vertigo(rotational spinning)/loss of balance. Episodic ataxia would also impact on this section, and I'm not sure if that has been accounted for.

8.Maintaining FocusMaintain focus to complete tasks reliably, repeatedly, safely and in a timely manner, unaided by another person.

This does not take into account a change in the level/loss of consciousness that can be experienced in basilar migraine. However I do note that there is a separate question on consciousness.

I'd also echo that of others, that the effect/impact of chronic pain is not addressed, nor the effect of medications taken to deal with this. I like many, take medications which state not to drive or operate machinery if they make me sleepy and have countless other side effects which are significant enough to disrupt my ability to operate.

I think these are an improvement - for myself, even though pain and fatigue aren't mentioned I'd feel happier about saying I "can't" do things under the safely/reliably/repeatedly clause. The scoring is going to be important though - since they've removed the criterion about time you're able to stand (without sitting) my problems are all under the first category, which presumably means I'd need full points there.

Sue wrote _ "...it appears to me that this is much closer to what a joint test for ESA and PIP would look like..."

Is it expected that one test will be used for both, and is that desirable? Seems to me it would lead to PIP judgements also being made on whether you are capable of working, and that you would only receive PIP if you were not fit to work. This would surely be a complete change to the principles of DLA, and people would be deprived of a benefit which could help them to work.

Sorry if this is an idiot question, but I have not been following this discussion closely.

Quick response because like you I don't have the health for a detailed response.1) why is movement in and outdoors put together? Indoors surfaces tend to be flat (eg no broken pavements, sticks, stones, tree roots, sideways slants...) and there are walls and furniture available to lean on. There is also furniture available to sit/rest on if have sudden loss of strength/balance.ii) why is there no discussion of communication with friends/family. If I can't communicate with a stranger it is always (for me) equally difficult to communicate with someone I know well.iii) over-reliance on use of aids (again). Aids are expensive to buy and maintain, and who decides what is suitable for a particular person and their condition?

not at all convinced by these 'changes' - in fact not at all convinced of the process. Atos are still under the direction to use only 'positive' experience of people's abilities. These desciptor things therefore are no more than fiddling about to look good. Thw WCA should be stopped now!!!

These descriptors make it WORSE not better for someone like myself who suffers from OCD. The more options given the worse it is to make one's mind up. Also when asked how often something occurs, the answer for those with unpredictable illnesses such as mental illness, is not something that is easy to gauge with a tick box. So sometimes something might happen 7 days a week, other weeks none. Also, in guidance given say by B&W, it says that if something has occured with dangerous consequences for yourself or others, then it might be reasonable to suppose for example with the "going out" descriptor that even though you do go out, because of the incident you should not be doing so unsupervised. There is no tick box for such a scenario. In my view it would be better to have a form more like the DLA form with fewer tick boxes and more room for your own description so the answers can be explained more thoroughly. Finally, only 2 descriptors add "reliably, repeatedly, safely & timely" and I was under the impression that legally this should apply to ALL the descriptors?

This is not for the ESA50 work capability assessment form that we fill out ourselves. Though that might be changed to fit in with some of these changes.

The tick box descriptors are for the assessors, but we are seeing how this will look to them, the things they will have to determine.

This is the link for the current ESA50:http://www.direct.gov.uk/prod_consum_dg/groups/dg_digitalassets/@dg/@en/@money/documents/digitalasset/dg_195544.pdf

The current descriptors can be found in the WCA Handbook:http://www.dwp.gov.uk/docs/wca-handbook.pdf

So you put in your form that you have had so many incidents when you've gone out, or better still, have someone to help you fill out that form because as you say, it's important to know what to include.

I can only judge the movement/lifting points, which are badly worded and organised so they must sort that out. But use the "timely, safely,.. " etc for each point.

Someone wrote "why don't they include pain?" It's there, or "discomfort" is, not always in the same place, so it could easily be overlooked by the assessor. That should be sufficient, but you need to write into your ESA50 that you have considerable pain or the assessor won't take notice of it.

Taking a descriptor at random "Movement – at a work station"Staying in one position (such as a workstation) for at least an hour, either by standing, sitting or a combination of the two, and Moving between this position and another. "

Can I do this?Taking as an isolated question, yes, I can do this on most days.The problem arises when real life creeps in.Can I do the above, if I also have to care for myself, at a predetermined hour, after getting transport to the above place (I do not live in town), and do this day after day?Not a hope.

It occurs to me that my three year old granddaughter would show up pretty well on most of these. Does that mean she should get a job? Isn’t there anyone with the wit to figure out that the reasons why you could work should maybe be considered along with the reasons why perhaps you should/could not. This very mechanical approach to work related tasks is really pretty barbaric.

How are people with learning disabilities/autism/brain damage supposed to deal with this?

My partner has MS, and although she works full time now, she might not be able to in the future. These changes make me much less scared for her if the time comes when she would need to go through this assessment.

I can however see areas where potentially she might have issues that would make it difficult for her to work, but which would not be picked up by these questions.

MobilisingIt is not clear if every section has to be completed – in my partner’s case, there are often times when she is unable to climb a flight of stairs, but on the flat she could be ok.

Getting About/NavigatingWhat is the difference between ‘navigating’ and ‘getting about’? As others have pointed out, there are other reasons for problems navigating than sensory ones. My partner has in the past got completely lost in an area she knows very well. The ‘Getting About’ section might cover this, but it is not clear.

Manual dexterityThis section talks about being able to do things without pain or discomfort, but no mention of fatigue. When fatigued, my partner often has poor grip and poor strength such that she cannot grip or hold or press things. She also would not be able to type. There’s not necessarily pain or discomfort, she just can’t do it.

Sitting/StandingAnswer a says ‘Able to stay in one position for at least an hour, either by standing, sitting or a combination of the two, and able to move between this position and another’Whereas the other options talk about not being able to sit and stand for more than an hour/30mins. This is confusing. If you can stand for one hour but no more, which applies? Shouldn’t option a state ‘Able to stay in one position for more than one hour…’

Also I don’t think 1 hour reflects what would reasonably be expected of anyone in a work environment. Should it at least reflect what would be expected in a typical part time shift? When my partner is particularly fatigued, she cannot sit or stand for one hour without needing to lie down. She works from home most days, so can work from bed if needed, but obviously most jobs don’t allow for this.

Bladder/Bowel continenceIt’s not an issue for my partner, but it’s not clear if this section also includes vomiting. If you are sick a lot due to medication or your condition, then that should be taken into account.

I still think that there needs to be something more concrete about fatigue and pain that specifically asks the assessor/decision maker to think about the combined effect on the person of doing all the actions in succession. E.g. someone might be able to walk 50m OR sit at a workstation for an hour OR concentrate on a task. But all combined might be too much, especially once you add in getting up, showered, dressed, breakfast, commuting…and remaining alert and focused for the whole working day such that you can respond to the needs of the job and workplace in a professional manner.

There is nothing here for anxiety conditions. ESA50 doesn't have any either. I suffer from Chronic Anxiety and Hyperacusis ( complete breakdown of tolerance to noise).Hyperacusis is excluded from benefit entitlement/assessment).The debilitating somatic symptoms of anxiety are excluded from ESA50 and from these descriptors. The only mentalhealth category seems to be the one referring to aggressivebehaviour as a danger to others. But you would have to be deemed pychotic to fulfill that! Fear, intrinsic to anxiety, is not taken into account at all.My Hyperacusis means I have to live in accomodation which is much more expensive than I would wish, i.e. very secluded, and in the quietest possible location. It takes my one person Local Housing Allowance plus my ESA plus my DLA to pay the rent (I have a tiny bit over) to live on. But; my LHA is being cut in April, as is my Council Tax Benefit. God help!! I also have some other rotten physical conditions(arthritis being one)We MUST make PIP a fairer assessment for mental and physical conditions. It CAN'T be a repeat of ESA.We must field as many Anti-Cuts election candidates as possible. If we take Labour votes in Corby, they would seeus as a threat and take notice. (Forget the Tories, vile beasts).

3] "I still think that there needs to be something more concrete about fatigue and pain that specifically asks the assessor/decision maker to think about the combined effect on the person of doing all the actions in succession."

Not just repeating a single task. Consider also tasks carried out in combination - e.g packing a suitcase after a visit. Organise for packing, walk around room(s), find things, bend and stretch, lift (heavy)laptop into case, fold up clothes, papers accurately, handle medicines (eg syringes), move filled (heavy) suitcase in narrow space, interact with others as to where to put things. And that's the simple one - packing to go away much more difficult. (Recent experience - all had to be done by someone else, except the coordination which was difficult enough.)

4] "I have to also agree about the fatigue, this too is part of my condition, although it can be brought on by 'overdoing' it in some way, most times there is no reason for it and can leave you like that for days and it effects memory etc." In my case fatigue brings on lack of "focus" - affects memory, word finding and ability to follow written and spoken information. On bad day, or at the end of the day, one difficult paragraph and I'm finished.

5] "I just pray that there is something in there about fatigue and pain. It needs to be there all over the place - People with MS etc get fatigued by doing very little and it changes from one moment to the next not even one day to the next!" Goes for ME as well. Though I note that Unum have been careful to re-write their rules to try to exclude ME/CFS. I suspect that these rules will also get rewritten to make sure that it excludes as many as possible on financial grounds. Too many people fight crippling fatigue and pain - even under the current rules they are finding more very sick people than they thought. These rules may be designed to be fairer, but there will not be any more money for the extra people they will include.

6] " ‘Immediate access to a toilet’ should be defined as the ability to access a toilet in less than five minutes, with appropriate support" PLUS "without any stairs".

7] Like Stef Benstead's points:

"1) why is movement in and outdoors put together? Indoors surfaces tend to be flat (eg no broken pavements, sticks, stones, tree roots, sideways slants...) and there are walls and furniture available to lean on. There is also furniture available to sit/rest on if have sudden loss of strength/balance. YES YES YESii) why is there no discussion of communication with friends/family. If I can't communicate with a stranger it is always (for me) equally difficult to communicate with someone I know well." Plus when fatigue cuts in you can add "loss of focus" - which causes communication problems. Hard if you can't remember what they said a minute ago.

8] Ability to move things needs to include the ability not just to lift but to put down accurately. What happens if you can pick up a jam jar but are likely to put it down on top of the cup of tea, or the plate of bread and butter? (or, at Tesco till, on top of the sponge cake.)

Like others I noticed effects of medication are not mentioned, not only do my medication make me extremely tired but also make me aggressive if people say things I don't like, employers will take effects of medication into account before even contemplating giving an interview never mind a job, but when it comes to benefits they don't care it's anything that will save them paying out.

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I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.